Why I Don’t Care What You Call Whatever’s Wrong with My Brain

It was a typical Sunday morning a few weeks ago when it happened. My mom was cooking me an omelet, and dad was reading the paper. I was rummaging through the cupboard to get some honey to drizzle on a banana when I heard it:

“CLAW.” And then there was whispering in a female voice I couldn’t make out, which I somehow knew was about me.

“What’d you say, mom?”

“I didn’t say anything.”

I paused for a moment. “Did you say something, dad?”

He shook his head.

“So neither of you heard it?”

“Heard what?”

A chill ran down my spine as I suddenly realized what just happened:

I was hearing voices.

I tried not to think about it too much, but deep down I couldn’t shake the feeling that this meant I was officially losing my mind.

If this was the first time I had signs of a serious mental health condition in recent months, perhaps I’d be less alarmed. But memories of my breakdown this summer, which I thought was past me, came rushing back:

I remembered all the nights I’d made my mom lie next to me in bed until the intense hopelessness passed and I knew I could temporarily trust myself. I remembered spending all day doing pointless activities on my iPad to drown out the despair, only to break down the minute I stopped. I remembered bursting into a sobbing meltdown in front of my doctor, the most intense one I’d ever had in six years of seeing him, when he asked about my suicidal thoughts.

I remembered his alarmed emails to my parents, the weigh-ins, their begging for me to eat something—anything, and also being fed an extra Seroquel whenever I had an emotional outburst.

And then I remembered how one morning, I woke up suddenly okay after an increase of my anti-psychotic the night before. And I remembered how, after a week at that dose, it was like nothing had ever happened. That whole month and a half now seemed far off and surreal, as if maybe it was just a bad dream.

I’d thought that painful chapter was behind me. But now what did it mean that, a month later, I was hearing voices? Was I about to come undone all over again?

Maybe this is why my neurologist thinks I need Rituxan, I mused to myself.

Indeed, this wasn’t the first time in my life that I’d had hallucinations.

I used to see things while I was in the worst of my brain inflammation from PANS, as in my last major relapse two years agothat was when I knew my health was in jeopardy. The walls would move, the ceiling would dance, and bursts of light would appear. Worst of all, I’d wake up in the middle of the night and see terrifying animals or people in my room.

That was when I’d regularly run around my apartment banging the walls in a primal rage I couldn’t control. That was when I was so stuck in my head that the world around me felt distant and fake. My textbooks stopped making sense, and I went from being a straight-A student to not being able to learn any material. My handwriting changed, and I’d write letters out of order but not know how to fix my spelling. My body would twitch and jerk and shake in exhausting ways I couldn’t stop.

I tried mood stabilizers to reign in my wildly fluctuating moods, but they had no effect. I tried anti-psychotics, but they made me feel like a zombie while offering no relief. SSRI’s made me more suicidal. Increasing my anti-depressant Wellbutrin sent me into mania and paranoia. I wanted more than anything to get better, but none of the meds or therapy we threw at me helped.

And that’s when I got high-dose IV steroids.

I came around in a few hours. And then I cried when I realized I’d not been in my right mind for weeks. Friends immediately commented on the noticeable transformationhow there was light in my eyes again and I seemed to be “here”when I went to class a couple of days later.

“I can’t believe someone gave you IV steroids for those symptoms,” one alleged encephalitis expert chided me a few months after the fact, I’m sure making assumptions because of my cocktail of psychotropic medications. “Steroids are extremely dangerous to people with bipolar disorder.”

“Right, so why did the steroids help me but not the bipolar meds at the time?”

The doctor paused for a moment, mentally squirming and almost, but not quite, considering her conclusions could be wrong. “Well, placebo effect is real.”

I don’t completely blame doctors for thinking I have bipolar disorder but am in denial of it. I’m at the prime age for developing it. I’ve had mania before, once going a couple of weeks without sleeping more then four hours at night and spending all day engrossed in a project. I’ve had psychotic symptoms some people with bipolar get, like seeing things, and now, hearing voices. And I’ve certainly had the bone-crushing depression. Interestingly, SSRI’s often make people with bipolar worse, as they can in some people with PANS.

However, I find it unacceptable that some doctors want to peg all of my problems as from being bipolar while not considering that it doesn’t have to be an either/or—having one neurological illness doesn’t preclude someone from having another. And by the way, what do they think causes mental illnesses like bipolar disorder? Why could it not be from inflammation in some cases?

Lately, everything is all too similar to my bipolar-like PANS flare two years ago, and yet I’m completely different.

The recent voices incident, and the return of suicidal thoughts in the week leading up to it, got me yet another new prescription of Seroquel at the highest dose I’ve ever been on—eight times higher than the dose I’d been stable on for nearly a year. Unlike my PANS flare two years ago, these days, all of my psych meds actually work as expected, so now I feel the best I’ve felt in months.

In fact, I’m doing so well right now that all of my local healthcare providers are astonished at how much healthier I am. Though I’m not thrilled about being on such potent medications, I have my life back, mentally and physically.

Now, I could talk about how Seroquel is thought to have anti-inflammatory, anti-histamine, and neuro-protective effects, but time precludes it. I’ll just put it out there so that you all know that I know the reason it’s working for me could be far more complicated than what it does to dopamine in the brain. Or perhaps it helps because of all of the above. Who knows?

I still get the occasional low-mood or an abnormally elevated-mood day, but I always remain connected to what’s happening around me. I can work a very part-time consulting job at home, which I’m apparently acing despite its difficulty. I’m enjoying connecting with old friends over FaceTime and coffee dates. I rarely have a single tic. I have dreams and make plans for my future. Suffice it to say that my life right now is the antithesis of what it is when in the depths of PANS.

So why the hallucinations and bouts of suicidality last month? And why is this happening while still on an aggressive treatment regimen for PANS with monthly IVIG?

Do the voices represent a PANS relapse, or is this something new?

Recently, I found out I had high levels of the GAD-65 antibody and that GAD-related dysfunction has been associated with bipolar disorder and schizophrenia. My neurologist wants to do Rituxan to knock out the antibody, which would allegedly help all of my symptoms. The hypothesis for the antibody causing both my mood/psychotic symptoms and the six-month ME/CFS (Myalgic Encephalomyelitis, aka Chronic Fatigue Syndrome) flare I’ve been in makes a lot of sense.

However, the farther along we get towards insurance approving Rituxan, the more uncertain I am that it’s the right decision. Am I making a mistake? Or do I not want to do Rituxan only because I’m tired of treatments and appointments? I can make a case for both doing and not doing Rituxan, so that’s why I’m about to get a second opinion from a neuroimmunologist who knows both ME/CFS and encephalitis.

What concerns me the most is that Rituxan is a major upset to the immune system—it wipes out your B cells. This could be dangerous if there’s any chance I have an active infection (ahem, Lyme disease or the virus behind ME/CFS). Since I’m stable and also making progress with my energy level and ME/CFS symptoms thanks to functional/integrative medicine, I’m scared to disturb my body in such a significant way with Rituxan. What if it makes me worse?

In the absence of the severe cognitive problems and movement issues that PANS typically gives me, as I had two years ago, and the fact psychotropic medication has never helped me this much before, I find myself asking an important question: who says what’s going on now is brain inflammation, rather than an after-effect of it? I can’t help but think that if my neurologist saw me day-in and day-out right now, and how functional I am, there’s no way she’d still want to do Rituxan.

Personally, I find it difficult to believe that there wouldn’t be consequences to going undiagnosed with PANS for eight years during my adolescence. How could years of untreated brain inflammation not have permanent repercussions on how my brain functions, and why shouldn’t that look a lot like bipolar disorder? There’s no family history of actual bipolar disorder, so this makes sense to me. It also gives me some hope that my brain could still heal with enough time, and maybe I won’t be on meds for the rest of my life.

On the other hand, if the worst that comes out of my thirteen-year ordeal with PANS is that I take psychotropic medications forever but they cause no side-effects, I’d say my doctors have done a great job. If I’m living my life as I wish without symptoms stopping me, then what more could I ask for?

So what if my brain needs a little extra help to get by?

And right now, that’s what I’m doing when it comes to the bipolar/PANS-like mood symptoms. If I could also get the ME/CFS/Lyme in remission, that would really be great—I have a gut feeling it’s all from the same underlying dysfunction (pun possibly intended since I’m working on gut health), so I remain optimistic I’ll keep improving the more of the cause I unravel.

At the end of the day, it doesn’t matter so much to me whether someone wants to call my current psychiatric situation bipolar disorder, a post-encephalitis syndrome, part of ME/CFS, GAD-65, PANS, Lyme, or whatever my own current functional-medicine hypothesis is. What matters is what we’re doing about my brain, and whether or not it’s working.

Not even my psychiatrist will completely commit to a bipolar diagnosis due to my history with autoimmune brain inflammation, and yet us using it as a blueprint for treatment is helping me greatly. Labels exist mainly to classify disorders to guide treatment, so the best you can hope for is that you find a label that fits well enough for its treatment to work. And right now, as I continue to improve, things are working well as I’m contemplating my next steps…

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